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Extremely Frustrated

Hi everyone!
I have been "sort of" diagnosed with Crohn's since my early 20's. I am 37 now. My first flare put me 40 pounds underweight. Between then and now I have had a positive Ibd bloodtest for Crohn's and ulcers in the stomach, and small intestine with an "inconclusive" areas in my colon.

The current flare up I am in began about 3 months ago. Ihave lost over 50 pounds and have spent two separate weeks in the hospital with fatal potassium levels. NOW, my IBD bloodwork is negative and I have a new GI who doesn't think I have crohn's anymore. So, I have no crohn's medication until he finds definitive proof of crohn's. My insurance won't approve another capsule (which all are appealing) because I have already been diagnosed with crohn's.

In the meantime, I just got out of the hospital after 10 K packs of potassium in 5 days and another 10 pounds down. Any advice for this CD sufferer would be great.
 
How can you not have Crohn's anymore? I don't understand that. You said this is a new GI? Can you go back to the old one? Or see someone else? Would your PCP give you some prednisone?
 
He said because he hasn't "seen" himself evidence of crohn's he thinks it may just be a problem with malabsorption. Which is ridiculous since if I couldn't absorb potassium I wouldn't be able to absorb it ever...not just when I am in flare...and he doesn't want to prescribe me any medication without making sure it is the right medication...whatever that means..."cause there are serious side effects"...more serious than 50+ pound weight loss and 2 fatal potassium levels?? Constant diarrheah etc....fun times over here :(

Jennifer
 
Crohns affects my potassium levels as well. Each time I go to the er I have to have either extra potassium in pill form - high dosage, or the iv drip. Mine has gotten to 2.7 a few times, never has been a good normal...what are your potassium levels? Can you see another GI or go to your previous one? Prayers for you!
 
2.5 and 2.6 and it usually takes 4 days of IV drips to get it to the 3.5 they need to release me...My previous Gi has left the state...unfortunately I am now taking high dosage potassium pills 3x per day to hopefully keep it in the normal range
 
I am taking 10 MeQ 2x a day to keep mine around 3.9. That seems to be the highest I can get it. They never admitted me however when mine was so low, only once about 6 years ago before I was ever diagnosed. Hoping you get good results soon!
 
Can you get the results of your original blood tests and other labs, colonoscopies? OMG, this is so crazy. Dont let them give you the run around. I hope you dont have Crohns, you hope you dont have Crohns, but it has been proven you do. flares and ulcers can hide for awhile so some doctors are not as familiar with how it all works. I would find a new doctor too!!!!! Deep ulcers are a red flag for Crohns. I am NOT an expert but all of us on here have done a lot of research. When was your last colonoscopy?
 
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